Through Evyn's Eyes

Today Evyn cried and told her therapist that she hated her brother and if she had a choice she would have him run over by a car. When asked why she hated him so much (besides the obvious) she said it was because I had money to spend on his doctors and medicine but I would not buy her a $1,300 parrot. It was unfair, Nicky's gets everything, therapists love him, he has friends at school, he get's mom's time and mom's money. Everything is for Nicky. It's not true but I sure understand why it looks that way to her.

She cried and got angry as she told us that she didn't have any friends at school. She explained that she needed the parrot because the only ones really there for her were her dog and her Skink (that's a lizard) and if she had a parrot she would have enough friends.

I offered to sit with her and work out a plan for her to get a parrot. I promised to compromise and work with her if she would work with me. I also talked about the parrot being a solution to a problem, not enough mom time, and we needed to resolve that problem. I asked her to share with me what she would want mom to do with her and for her, because I heard her saying that what I was doing was not necessarily what she wanted. She refused to do either.

The good news is, she is talking about her feelings and maybe letting it out will help a little. The sad news is at 14 this is her reality and she is hurting and buying a parrot won't make it better.

A Different Perspective

Here is how Nicky likes to look at the ocean! Up close and thirsty. This is such a perfect picture of a little boy who is very interested in what life has to offer. Yes, I was in the background saying Nicky "Yuck!!!! Don't drink the water that's nasty" and then I saw how darn cute he was just being a boy and I took this photo.
Note to self...always remember he's a boy with autism and not an autistic boy.

Autism Sucks

Autism sucks. Tonight I was watching Autism the Musical. I'm glad for these familes, I'm thankful for the women who gave so much and I'm sure that the documentary will have it's version of a happy ending. But I can't watch anymore. It’s a little too much reality for me. 

The edited down version of hundreds of hours of families pain and frustration condensed to reveal the most painful and insightful moments. A picture wisely designed to impact the people who don’t understand "Autism" by giving them a real peak into the most difficult and saddest parts our lives.

But, I do understand, I live the life they are showing and it’s a total emotional over load for me. Watching ASD kids who are verbal talking about bullies and ASD kids who non-verbal trying to communicate complete with physical melt downs and violent behavior, hurts. Watching parents talking about divorce, parents talking about depression, parents talking about how it will never be okay for their children until people value people with autism and parents talking about wishing they die before their children, parents filled with raw emotion that had no place to go so it escapes when ever there is an opportunity. 

I am all of them. They are all part of me and it’s too hard to watch.

A reminder he knows so much

Finally, Nicky's days are getting better. After weeks of being sick he's getting back to being Nicky and then some. Today he did two really cool things. Everyday he comes home with a work log for me to sign and in the space where his aids usually write my name, Nicky wrote my name above the line and then signed for me! He actually tried to duplicate my signature. It was so cute. I never really gave any thought to if he was even paying attention to the parent sign in sheet, but low and behold....he was.

We have been working on getting him to respond to questions/statements. Today his therapist said "Guess What", Nicky replied "what" and she said "Mom's on her way home". Then unexpectedly he said to his therapist "Wendy, Guess what?" she turned to him - really happy and a little surprised that he had turned the tables on her - and said "What Nicky" and he replied "I want to play on the computer".

Finally his conversations are expanding. It's slow but we keep moving forward. We continue to get bits of confirmation that we are moving forward.

It's been a good day.